Control of my deterioration will give me optimism about a future I hadn’t dared dream about
Yvonne Pettigrew, diagnosed with primary progressive MS (PPMS) in 2013, shares her experience of living with PPMS and reacts to the "exciting" news that Ocrevus has been approved by NICE for NHS treatment of early, inflammatory PPMS.
“It’s good news Yvonne! The scan shows there’s no lesion in your lumbar spine“– well you’d have thought that really was good news wouldn’t you, except I knew that it wasn’t. It meant that there was something going wrong further up my spine, or in my head.
The scan had been ordered by a colo-rectal surgeon who I’d been seeing over a period of years to try and find an explanation for my gradual loss of bowel control. After many and various undignified investigations we were no further forwards. So it wasn’t until my bladder control also started to malfunction we began to join the dots and the surgeon ordered the lumbar spine scan, thinking there was perhaps pressure on my spinal nerves from a tumour.
Knowing the lumbar scan was clear, but that there was still very definitely something going very wrong with my body, I was prompted to mention to the surgeon that for a long time I’d been experiencing a gradual loss of normal sensation in my feet and then legs, but as investigations had led nowhere, with frustration I had just started to accept this and try to live with it. He quickly agreed the symptoms were likely to be interconnected and arranged for my care to be handed over to a neurologist.
In a way it felt reassuring to finally be getting to a position of being able to understand what was wrong with me, but it was still with trepidation that I underwent a series of MRI scans of my head, neck and thoracic spine. Even before the scans the Neurologist had talked to me about the likelihood of the diagnosis being primary progressive multiple sclerosis (PPMS) and explained the different types of MS for which the history of the changes are almost as important as the scans. I learned that my journey had been one quite typical of people with PPMS; there are no specific flare ups such as are experienced in Relapsing Remitting MS (RRMS), but instead there’s a gradual deterioration most notable in the legs, bladder and bowel.
A definitive diagnosis was important to me – so I could be absolutely sure who my beast was – and that was made in 2013 on the basis of a lumbar puncture, the scan results and my history.
The diagnosis when it finally came was almost a relief. To know what I was dealing with was a significant step forwards, and I was ready for the treatment that would slow the disease progression and halt my slowly creeping impairments. Everyone knows that there’s a wide range of disease modifying drugs for MS, don’t they?
So the bigger shock for me and my husband was to learn that there was no treatment for PPMS; nothing that would change the course of the disease, only drugs to control the symptoms. It was devastating and almost unbelievable news. Even though it was good to know there were possibilities on the horizon, from exciting research developments which may mean there could be drugs to limit disease progression in the future, crossing fingers and toes wasn’t going to make things better!
My disease progression has in the interim been thankfully slow. I have been able to carry on working, initially full time for a couple of years and then stepping down to a part-time job with less strenuous requirements as the best way to manage my energy reserves. I’m still able to drive and make sure I keep myself as fit as possible with Pilates and gym workouts.
My MS symptoms are largely invisible and rarely stop me in my tracks, but dealing with the challenges of my bladder and bowel, sensory loss and more recently muscle rigidity in my legs, unpredictable balance and unexplainable fatigue, were not quite how I expected to be approaching my retirement.
So I can’t tell you how exciting it is to unexpectedly have the first drug to treat PPMS, Ocrelizumab, approved for use within the NHS. I had the privilege of being the MS Trust’s patient expert into the NICE committee meetings where the drug was being evaluated and I felt the patients’ perspective was treated with respect and understood. It was hugely frustrating however that it seemed likely at the end of the first round of meetings the drug was going to prove too costly for approval. Thankfully the drug company and the NHS have worked together to come to positive outcome. I know there are of course strict constraints governing which patients are expected to benefit from Ocrelizumab and therefore who it can be prescribed for, but I’m desperately hoping I am one of them. Control of my deterioration will give me optimism about a future I hadn’t dared dream about.